New members to the Bereaved parents club:Darrin and Rachael West

A little tree has been chopped down before it has a chance to grow. Rest in peace Jackson.


http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10776120

This new year, a couple will not be rejoicing. I do not know them personally, but I know them by default. They have joined the Bereaved Parents like me. For we belong to the club of bereaved parents. Membership is not by choice but by compulsion. Jackson lived longer than my Andrew, but their experience is similar to mine. I too knew my son wasn't going to have the chance like healthy children. My thoughts are with you, cry and feel the pain, don't hold back.

Darrin and Rachael West always knew that their son Jackson had only a small chance .
He was born with an extremely rare form of leukaemia that causes purple spots - an illness that saw him dubbed the Blueberry Muffin Baby by doctors.

Despite the odds, the Taranaki couple refused to contemplate the possibility Jackson wouldn't pull through.

Rachael spent 10 months in Auckland while Jackson was in Starship Hospital and said the hardest part had been not seeing her other children, Bradley, 4, and 3-year-old Katie.

Six months ago Jackson underwent a bone marrow transplant. His condition gradually improved, and after all the chemotherapy, hospital visits, scans and blood tests, they had even started to see his true personality emerge. His naughtiness and cheekiness showed all the traits of a normal little boy.

But just before Christmas, doctors discovered the aggressive form of cancer had reinvaded the 21-month-old toddler's bone marrow.

The little battler was given 48 hours to live. He lasted 13 days.

Rachael detailed her torment in a Facebook post on December 28: "Well. It's 12:25 and Jackson has stolen another day.

He is very weak and has deteriorated since yesterday. It is gut wrenchingly horrible to watch someone you love so much succumb to this hideous disease. To watch him fighting to breathe, it's heart breaking. But still he clings on. As much as I want him to live, I want his suffering to end."

Jackson died that night in Taranaki Base Hospital.

Yesterday, hundreds of people attended a ceremony at the Inglewood Town Hall. Friends held simultaneous ceremonies around the country, releasing balloons.

Rachael said they had never given up hope that Jackson would pull through.

Speaking before the funeral, she said: "For us there was no way this was going to happen in our hearts. We have got through so much with him, he was going to grow old.

"In the last couple of weeks we started to see his true personality emerge. We have lots of photos and videos of him and we can look back on that and show our 3- and 4-year-old. We are so grateful that we got to see his stroppiness and cheekiness."

Despite Jackson's illness placing a massive financial burden on them, Rachael and Darrin never sought to publicise Jackson's plight.

But the grieving couple say they are proud of the way Jackson battled every day of his life.

"I want people to know about Jackson," Rachael said, "and to know that with so many horrific stories of child abuse, that there are children that are loved."

Darrin added: "The whole 21 months of his life, this has always been a possibility. It's just been a real roller coaster ever since."

Fundraiser for Jackson's Family( may he RIP)

Your Inner Princess made this truly one of a kind headband/hair clip to raise funds for the West Family, and put it on our online trademe. http://www.trademe.co.nz/436118648. She wrote:
I have a child with cancer, so Jackson's journey is very near and dear to my heart, alone I cant do much to help, but TOGETHER we can. Ka Pai Inner Princess.

Special Needs children,

I am part of the Change.org which is an online organisation that fight for justice of the underdog.

Yesterday, I got an email petitioning to end abuse of Autistic students in Mercer County, Kentucky. I did a post http://ann-mythoughtsandphotos.blogspot.com/2011/12/sign-petitionstop-mercer-county-ky.html
on my blog and facebook.

As I did the post, I was wondering how it affected me or to many, what is it to me? As a bereaved parent. I was told through the experience of parents who have special needs children, the initial feeling was one of bereavement. They are bereft of the healthy baby/child they have hopes and aspirations they have for the child. Once that bereaved period had past, they learn to accept this child who will have a lot of challenges.

During my stay in the hospital, I met two sets of these parents. I will never forget what they asked me," Is it better that your Andrew dies and you suffer an intense lost, and then you can move on, or is it better if we have a less sick child, but we have to help her all her life?"

No wonder Sandra Baker is fighting for her 9-year-old son Christopher. Fight on Sandra, I am behind you.

Here's from my book: 2 mums.

Andrew shares his nursery with three and sometimes four babies. Most of these babies are just premature and have nothing wrong with them. Occasionally some of them have some problem, and with a lot of medical intervention, they survive with some sort of handicap. They stay in this ward 6 and grow until they reach the magical number of 2.5kg or 5.5 lbs. The mothers then joyfully take them home. As we usually do not discuss our babies, many of the mothers do not know Andrew’s situation.
They are euphoric and tell me, “Don’t worry, your turn will come to take Andrew home.”
I smile at them but cry inside. He won’t be coming home with me.
Andrew is the longest staying baby in the ward. I sometimes joke with the nurses that he’s the oldest swinger in town. It is ironic that his ward is the last room in the promotion line. There were some mums who talked to me about their babies. What else could we do when we sit in the tiny cubicle but talk?
There was Sina’s mum T. She was diabetic, and Sina was very premature. Sina was also hydrocephalic. Her head was growing bigger and bigger and was almost the size of a big balloon. You could literally see her veins and her head stretching as though it was going to pop. Sina had a few operations to insert a shunt to drain the fluid. Sina’s mum T was a big Samoan woman. In her simplicity, she forgot the rule of not asking about other babies or telling them about her own baby. She was worried that Sina would be mentally handicapped. Sina’s cot was just next to Andrew. I think she knew that Sina would be handicapped but didn’t know to what degree. One day when Sina was in the operating room, she held my hand and cried.
She asked me a very profound question, “Ann, is it better that your Andrew dies and goes to Heaven or is it better I have a very sick Sina for the rest of her life?”
I couldn’t answer. I held her hand and cried with her.
I said, not even convincing myself, “Of course, you are in a better situation, you will always have Sina, and I have nothing when he dies.”
Sina was discharged.

On 23rd October, a little boy, Jona, was born with Down Syndrome. His dad was a young church minister of the same denomination as ours. Jona was the third child of the young couple. Our similarities were so alike, except that Andrew was dying; and Jona was expected to live though without the best quality of life. Jona’s having Down Syndrome came as a big shock as they had no antenatal warning. Doesn’t that sound familiar? His mum’s gynaecologist had not picked it up? Jona’s cot was next to Andrew’s and I overheard her talking to the doctor. I was crying for her. It was as if she was living a repeat of Andrew’s tragic story. When the doctor left, I broke the rule of not speaking to other mums about their baby’s condition.
I spoke to her, “I am sorry about your baby.”
We became friends. They had no idea how badly affected Jona was; they too were worried about a very bleak future for Jona. You may be surprised to know this discovery I made. If you remember Sina who had hydrocephalus; I wrote that Sina’s mum asked that profound question, “Ann, I don’t know which is better, to be very sick, but alive, or you have a baby and after he dies, your life would return to normal.”
This question was asked not only by an uneducated Polynesian woman. Jona’s mum was a highly educated Pakeha woman. She too asked that same question. I conclude that it is universal for every mum faced with the prospect of bringing up a very severely handicapped child. What is his future? What is my future? Is it better that he died early?

People who had impacted me.

1999, the first reunion, our teachers Mr. Johnson from UK, Mrs. Rao from Australia, and Miss mamora.

Miss Fries from Maryland, USA

After my book was published, I had been asked frequently how I got into writing. I won't like to say, "Ghosts of my past," but there was a group of foreign teachers from USA, Uk, and Australia who left the comforts of their homes to come all the way to Borneo. They have impacted me in my thoughts and my character.

Thank you Miss Fries from USA, Mr Johnson from UK, Mr. Gregory (not photographed) from Australia, Mrs. Rao from India, and Mr. Temple from USA. This year I found on Facebook Mr. Funk from USA. Mr Funk was teaching when I was a junior. Happy birthday Mr. Funk.

Rachel Jean

Stranger things have happened, and this has to be one of the strangest.

I had resisted putting up the Christmas tree, though it's 3 sleeps to Christmas. The water engineer is away overseas on work assignment, and it was just my 15 year old and me.

There was another reason why I was hesistant about putting up the tree. I wrote this in my book, "Dairy of a bereaved mother." which I posted this passage this morning.

"When Andrew died, I gave away all of his things except one, that little brown puppy dog. I kept it with his lock of hair. Then I kept it with my Christmas decoration. Every year, when we decorated the tree, I have told the children this is Andrew’s dog. In my heart, I grieve for Andrew. This is another Christmas he won’t be joining us. I told nobody about this."

We moved to this neighbourhood near Pt Chevalier Beach. The waters are too still to surf, and my 15 year old had been dreaming about surfing for a long time. We went up to Omaha beach on Sunday, bought his wetsuit, and he had become a real surfie junkie.

Yesterday, he came home and told me, I met a friend and he invited me to join him surfing. I asked how old his new friend was and he said 8. As a naturally curious and cautious mum, I wanted to know more. My son gave me the boy's mum's business card. I didn't recognise the company except it was in the media business. I told my son I would email the mum.

She replied and told me she became a widow this year. I wrote," Someone/something brought your son to my son, and then brought you to me."

When I wrote my book, I wrote as a bereaved mum, I not only became a spokesperson for bereaved parents, I also have empathy with all bereaved people, no matter who they have lost.

The Chinese say, "YOU YEARN" or have fate. As this year draws to a close, I thank God for Rachel and Frankie.

The kids are at the beach again, and I went on the google machine. This is what I found about Rachel, and I shed a tear for her.



http://screentalk.nzonscreen.com/interviews/rachel-jean-living-and-laughing

An insight into the making of her documentary Life, Death and a Lung Transplant about her husband’s Cystic Fibrosis and lung transplant
Pauli O’Halloran is just the 96th person in New Zealand to have received a lung transplant.

http://www.stuff.co.nz/auckland/local-news/central-leader/513775/Couple-breathe-easy-as-doco-airshttp://www.blogger.com/img/blank.gif
http://www.blogger.com/img/blank.gif
Last updated 15:03 01/07/2008

http://youtu.be/s14nLANczMM

A Sandringham couple has put the hardest years of their lives on the small screen.

Life, Death and A Lung Transplant is the story of cystic fibrosis sufferer Paul O’Halloran, filmed by his wife Rachel Jean.

The documentary spans five years of the couple’s lives, but most of it is based around Mr O’Halloran’s 2006 lung transplant.

He says his lungs had "given up the ghost" and were only working at 21 percent by the time he had the operation.

"I couldn’t do anything. In the last year it got pretty terrible."

The couple were living in Helensville at the time and he could not walk the length of their 50-metre drive-
way without stopping for a rest.

His condition deteriorated and he ended up in hospital more frequently, staying for up to a month each time.

Mrs Jean says a friend who also makes documentaries asked if she could do a story on Mr O’Halloran.

"We said it was fine and I asked if I could have the footage afterwards because I thought I would make a documentary if the transplant happened."

When their son Frankie was born she decided to make the documentary anyway as a record of Mr O’Halloran in case he didn’t survive.

The project became even more important when they had their daughter Violet, who was three months old when her father got his new lungs.

The couple started discussing a transplant with doctors when Mr O’Halloran’s lung function was at 35 percent.

"The specialist used the words ‘on a slippery slope’," she says.

Because the surgery is so risky, doctors started tests early and Mr O’Halloran went before a selection panel.

"It’s one of the hardest surgeries to survive and get through. It’s not fun, but having said that, I would do it again at the drop of a hat if I had to."

Fifteen percent of patients who have the operation don’t survive long enough to make it out of intensive care and only half of the survivors live past five years.

The documentary, to be screened on TV3 tomorrow night, shows the lead-up to the transplant, including the late night call from the hospital to say he had new lungs.

"I happened to have been filming the kids and I had the camera on the table. When I heard the tone of his voice and what he was saying I knew that was it.

"I picked up the camera and started filming," says Ms Jean.
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A documentary maker for 15 years, she has made more than 50 programmes and says having 24-hour access to her subject made this one of the easiest documentaries to shoot.

"A lot of it is essentially home video footage, we just tend to shoot on better cameras than the average household.

"A lot of the time we would pick up the camera and shoot it ourselves."

Because the other camera crews were acquaintances or friends, the project wasn’t stressful for Mr O’Halloran.

"It really wasn’t a big deal, it felt fine."

Although he had a successful transplant in April 2006, Mr O’Halloran had difficulties and finally got his lungs fully functioning again in November last year.

He takes between 30 and 40 pills a day to stop his body rejecting the lungs and maintain his health.

He will be on the medication for the rest of his life.

But it’s all worth it to be able to play with his children and go surfing again.

Before the transplant, he couldn’t even hold baby Violet because the weight on his chest was too great.

"It was fantastic to see her fall totally in love with her father," says Ms Jean.

The documentary ends with family and friends celebrating Violet’s first birthday.

Andrew's dog and Christmas

October 4th, 1989
I had no recollection who I went with and how I went; or if I did the things I intended to do. I did go to Newmarket and was at the Chemist shop at 277, Broadway. Suddenly, I wanted to buy things for Andrew. I had not prepared anything for him. I grabbed an armful of soft toys, and as I was about to pay for them, a torrent of tears flowed. What was I doing? Andrew couldn’t play with them? Andrew was dying. The girl at the shop saw me and asked if I was okay. She probably thought I was sick. I held the toys to my chest. My poor Andrew, Mum hasn’t given you anything. Eventually I composed myself and chose a little brown puppy with floppy ears and big brown eyes. I gave it to Andrew and put it in the bassinet. Deep in my heart, I had a sense of satisfaction. Sweet Andrew, Mum did give you something after all.
When Andrew died, I gave away all of his things except one, that little brown puppy dog. I kept it with his lock of hair. Then I kept it with my Christmas decoration. Every year, when we decorated the tree, I have told the children this is Andrew’s dog. In my heart, I grieve for Andrew. This is another Christmas he won’t be joining us. I told nobody about this. I wonder what Chen Onn will think when he reads this. In December 2004, Gabrielle and I left Singapore for New Zealand. Chen Onn rang and asked if he could donate the Christmas tree to the students. They were raising funds for the tsunami in Indonesia, Thailand and Sri Lanka. I told him, make sure you keep Andrew’s dog.

I still have the puppy dog and I will keep the dog as long as I live. Then I will bequeath it to Deborah. She knew her brother better than Gabrielle and Samuel.
The morning doctor saw the puppy dog. He said I looked much happier. He suggested that instead of dwelling all the time on the sad situation, perhaps I could think of the good things. He had noticed that I was writing a lot and I had a lot of friends.
He suggested, “You have so many helpful friends, why not write about them? It will be good therapy.”

This children’s song I used to teach my Sunday School class came like honey. Count your blessings, counting your blessings one by one.

When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.
I couldn’t remember all the lyrics, but the words “count your blessings, count your blessings” became real and comforting. I thought of all my loved ones, my husband, even though I had threatened to leave him the day before, my two beautiful and healthy girls, and my many friends.

http://www.youtube.com/watch?v=IZk9w-uywAs&lr=1&user=asiadownunder

Natalie

The flowers on this photo is not perfect, it has defects. Just like this story, it is not a happily ever after story.


Natalie with her son Jackson. She found out she had cancer the day before he was born.











In my city of Auckland,
Natalie Murphy died on Monday afternoon,
She bravely battled cancer,
She was only 35.
Two years ago she found a lump in her breast,
On the day before her son, Jackson, was born.
She was told it was cancer a few months later.
Natalie captured hearts with her determination.

My thoughts are with you, Greg and her son.
Tonight you cry, because it is ok to cry.

Diary: Tree House

As I walk around Auckland, this tree house is nearest to the tree house I once made with my very good friend Brina.


Andrew 10th December 1989

Don’t let his life be in vain,
Do something,
Do something even if you don’t feel like it.

It is a fine line between what reality was and what a dream was. My stress dreams and my reality were rolled into one. They were massive scary, tormenting nightmares. I was a wreck, I wasn’t sleeping, and I wasn’t eating. Even preparing a simple lunch was a chore. I didn’t eat any lunch as I only had Gabrielle at home. I lost a lot of weight and looked really slim but haggard. I didn’t care. I had given up on myself.
The weather was warming up. We have a big oak tree in the front section. Deborah wanted a tree house and had been pestering Chen Onn to make one for her. His procrastination infuriated me. I took the hammer and some planks of wood and proceeded to make it myself. I was stubborn and belligerent
I wasn’t going to wait for Chen Onn. It could be next summer if I depended on him. Brina came over, and we two women went hammering. The house was very crude but it served its purpose. To Deborah, it was the best tree house ever. She and Marisa and Simon had great fun. Deborah still remembers that tree house which her mum and Brina made. The kids laughed and enjoyed the house. Was I happy that I achieved something?
I sat on the stairs of our house crying. I made that tree house, Where was Andrew? I wanted Andrew to enjoy my tree house, to laugh with his sisters and his friends. I wanted Andrew to climb up and down the steps. God! I wanted him back. I cried sad, sorrowful tears. I cried raving, boiling, volcanic lava. I was angry, I was so angry. God! Why did you give him to me if you were going to take him back so quickly? I would rather you never gave him at all. My pain was so incapacitating. I held my hammer in my hand. I wanted to hit the wall. I needed to vent my anger. The house didn’t belong to us, and I couldn’t account to my landlord for the hole if I had bashed on the wall. Chen Onn would be very angry. So I visualized myself doing it, knock, knock, knock!
Deep in my heart, there is a hole. Some invisible being was hammering, and knocking and making the hole bigger and bigger. My heart was gushing with blood. How can my broken heart be whole again? Who can repair it?
Brina came from her house. She made two cups of piping hot tea. She just sat next to me. She knew that was the best thing to do. She didn’t have to say anything. Brina too had buried a son. She understood and she knew the pain. The hot tea scorched my lips, but the pain was nothing compared to the burning in my heart.
It is all very well for people to sing, “It is well with my soul,” These people have never been in turmoil. They have never worn my shoes. My soul had been crushed. If a mirror is cracked, no matter how you repair it, it will never be the same.

Deborah's 5th birthday

When I started this book blog, it was my intention to post excerpts of my book. I had not done that because it has been so busy this year.

Tomorrow 8th December will be my oldest Deborah's birhday. She is alone in Harbin in China. I am home alone with Sam because the water engineer is on overseas assignment. I think of that particular birthday that Deborah had. The birthday after Andrew had died.


Deborah wearing her dress I made the night before.

A special cake that wowed her friends.




It was Deborah’s birthday on December 8th. In New Zealand, your fifth birthday is a very important day. You start at school on that day. Yesterday, her kindergarten teachers took her to her new school, Maungawhau School, for a visit. She came home all excited: they sang Happy Birthday to her, and gave her a very important chore. They gave her a white mouse to take back to her kindergarten. Her head teacher Margaret said this had never been done before. Margaret had told Maungawhau School about Andrew’s death, and they wanted to make her feel special. On the 7th, they gave her a farewell with a big play-dough cake and gave her a crown for a princess. She stood on top of a pedestal.
On our way home, I promised to sew a new dress for her to start school. I remembered the other promise that I hadn’t fulfilled. I told her that I would sew her a new dress for her to wear to Andrew's funeral. But I couldn't, I simply couldn't.
So off we went to Geoff’s Emporium and bought a length of stretch green stripy fabric to make a dress. That night, when everyone had gone to bed, I sat down to sew. Anyone who sews would tell you that when you sew, you need to give it your full attention to produce a good outcome. I had not slept properly for months, I was not in the right state of mind, but I was determined that I wasn’t going to fail her again. There was a lot of sewing and unpicking. I don’t remember how long it took. I eventually finished it and hung it at her door.
It was all worthwhile when I heard her say, “Mum, it is beautiful” and she gave me a hug.
I was lying in bed when I told her to parade herself and to do pirouettes. We gave her a pink backpack, her stationery, her drink bottle, her yellow lunch box, her new shoes and socks. It was easy for parents to buy presents for their five-year-old to get all their requirements for their first day at school.
Deborah was all set to go to school. Our neighbour Brina’s kids Marisa and Peter had come to take her to school. She was excited, but I wasn’t ready. By the time I was, Marisa and Peter had gone and it was too late for us to walk, so we took the car. Deborah was disappointed. She and Marisa had talked for months about walking to school. I saw the class teacher, and I told her about Andrew. The teacher said she had been told, and she would be watching out for Deborah.
Looking at my little girl going to school in a dress which was shabbily made, and failing in getting her to school on time and upsetting her plans she had made with her friends, must have given me a jolt. I drove home with Gabrielle. No, I didn’t have the motivation and energy to do things. I went on a frantic writing spree.
Yes, that was what I could do, I could write about my feelings. I was struggling with my grief and desperate for an outlet for my pain. My outlet was writing. While I wrote, I told God my pain, I told God my anger, I told God my hopelessness. I wrote to thank all the lovely people at Ward 11A, I wrote to thank all my friends who helped me journey along my hour of darkness. I wrote to my dad, to my siblings, to all my friends who had returned to their home countries in Malaysia, Singapore and Indonesia. I wrote to the hospital superintendent to thank her and tell her what a great job the doctors and nurses had done at 11A, Andrea in the crèche, Cherry Thompson in the Nurses’ Home, the check-out operators at Oliver’s, and Wendy Green. I even wrote to everyone at Ward 11A; I remembered everyone, from the doctors to the cleaner, who was involved with Andrew in one way or another. I even remembered most of their names and what special things they did. It was a six foolscap pages long.
It was therapeutic, all this writing. It was like God was saying; cast all your cares on me. I will not forsake you. The young doctor who spoke to me in the beginning days was right when he told me to focus on the good things, like friends who have helped me. Of course, during the early days, it was easier said than done.


We hadn’t celebrated Deborah’s fifth birthday in anyway. She went to bed thinking that we didn’t celebrate because Mummy wasn’t feeling well because baby Andrew had died. I baked her a cake after she went to bed. It was going to be a surprise. I had not baked since we found out that Gabrielle was allergic to egg and dairy products. Before that, Deborah enjoyed baking very much.
I made a rectangular cake, and wove a basket of patterned brown chocolate icing around it. Then I cut part of an ice cream carton and used it for the handle. I filled the top with lots of miniature fruit candies. There were red strawberries and yellow bananas. It really looked very good, like a basket of fruit. It conjured up images of Red Riding Hood taking a basket of goodies to her ailing grandma. If only you could see the photos. I must have stayed up the whole night baking, waiting for it to cool and then icing it. Chen Onn was used to me staying up and not sleeping. Sometimes, he would call me to bed; at other times, he just went to bed by himself. It was useless calling me to bed because I wouldn’t come.
I hid the cake from her, and in the morning, we just carried on as though it was any other day except Dad was home.
In the afternoon, we took Deborah and Gabrielle with Marisa and Peter to McDonald’s at Broadway in Newmarket. It had a nice indoor playground. Deborah thought were were just going to McDonald’s for a meal. There we surprised her with her friends Joy and Craig DeStiger, Miriam and Joanna Finch, Anna and Scott Bettridge, the Teal boys and others. Deborah was over the moon when she saw the cake. She had a marvellous time, and thoroughly enjoyed herself. Birthdays at McDonald’s playground and birthdays were a new thing at that time. An employee of McDonald’s coordinated the games and party favours, so I didn’t have to do much.
I was in turmoil: if only Andrew was alive and was a normal baby, I would be the happiest person in the world. I let the employee conduct the party and I just sat there reflecting. Deborah was our first-born, and Andrew was our first-born son. Having a son is so important to a Chinese family. I had failed Chen Onn, I had failed the Chin family.
Towards the end of the party, my brain was so numb. Someone touched my shoulder. She was someone I had worked with in Auckland Hospital when I was the crèche administrator. Her daughters went to the same Auckland Hospital Crèche as Deborah and Gabrielle. Her older daughter later went to the same kindergarten as Deborah. She had brought her daughters to McDonald’s, and Deborah was glad to see them. I forgot her name, but I remember her face because she was in the photos. We sat and I didn’t say much.
She said, “Still hurting, huh?”